Jaundice Jill's space

Well... I'm still around, just haven't updated the website in.. a 9 months or so.  Oops!

 

Let's see, it's unbelievably cold in the Chicago area. I think the temp was -7 today.  We're all ready for warmer weather! Too bad it's still 2 - 3 months away.

 

So, the big news is that I have been on another new medical journey.  My liver is doing well (it'll be 3 years post transplant this May!). However, this time it was another organ, my large intestine, that started acting up. It all began in May 2008, when I went in for an MRI of my liver. I've been reluctant to write about it... who reallly wants to share the details of their GI (gastro-intestinal) problems. & even more so - who wants to hear them!? TMI!

 

However, I think it's an important issue that needs some attention. Did you know that in 2007 more people in the U.S. died from colon cancer than from breast cancer & AIDS combined!? Isn't that shocking? Esp. when you consider that colon cancer has an 93% recovery rate when found during stage I. The thing is there aren't always tell tale signs & people find a lot of excuses to avoid getting a colonoscopy.

 

So, they found I had an auto immune disease (colitis) and then biopsies showed "dysplasia" (pre-cancerous cells) in my colon.  That, combined with my medical history of the auto immune liver disease, PSC, put me at a high risk for colon cancer. So, when the GI team reviewed my case & recommended that I have my entire large intestine removed, I was shocked! I had visions of wearing a 'poop bag' on my side for the rest of my life. That's something that happens to 80 year olds, not me at age 36!

 

I struggled with the decision. In 2006, when they told me I had a cancerous tumor in my liver, the choice was easy. We'll do chemo, radiation, and the liver transplant. This was a gray area. I don't have cancer, but odds are I could get it. When? What exactly are those odds? What's involved with treatment? What is a "proctocolectomy"? Will I ever be able to have kids? How quickly could cancer appear? How much time do I need to take off work?

 

So, long story short, on Dec 2nd 2008 - I gave up a few more body parts. They removed my entire large intestine, my rectum (Oh my - how weird is that!? ), and my appendix (which is attached to the colon).  They took the bottom 1 - 2 feet of my small intestine and created a "J-pouch" and further up the line, the created an ilesostomy. So, I now an ostomy, a piece of my small intestine sticking out of my body, where wastes empty into a bag.

 

The good news... the post surgery pathology report showed NO CANCER! Hurray! Ok, so was it a mistake to have the surgery? You can't think like that though. I've been down the cancer path once before & don't want to risk it again.  Also, the ileostomy is temporary. After 3 months or so, they'll perform a 2nd surgery & "reconnect my plumbing".  I'll never quite be "normal" when it comes to GI stuff, but... I will go to the bathroom like a normal person again & not in a bag.

 

The recovery is taking longer than expected. The surgeon advised a 7 day hospital stay, which turned into 20 days! I was in for most of December & finally released on Christmas day. So, I missed most of the holidays. I'm still on medical leave from work, as my strength isn't back yet, I take naps, am getting my appetite back, give myself IV fluids at home to stay hydrated, am taking 5 different medications, and figuring out my new medical attachments.

 

So, that's where things are at. I plan to return to work in February. I've been spoiled in that I avoided the commute in this frigid weather. I miss being able to do things though & I'm having a heck of a time finding clothes that fit. It's the first holiday season where I've lost 20 lbs!  My stomach sticks out though & I have this bag hanging down & an 8" incision which starts just above my belly button. I have to laugh when I look at my abdomen. Between my surgeries, I've lost my liver, gallbladder, large intestine, and appendix. Plus, I have 20" of incisions & 8 holes on my scarred tummy. You could play tic tac toe on it!  I'm grateful to be alive though, cancer free, and just trying to stay positive these days.  I hope you're all doing well too.

 

Take care & God Bless!

 

Info re. Cancer Prevention & Detection available at American Cancer Society

 

 

 

“A minister and a rabbi walk into a hospital…..” click on the link to see how this story ends: http://religion.beloblog.com/archives/2007/02/now_this_is_an_interfaith_stor.html

 

November 9 - 11, 2007 is the 12th Annual National Donor Sabbath
Celebrate the miracle of organ and tissue transplantation.

 

During the weekend of Nov 9 – 11th we will observe the 12^th annual National Donor Sabbath. People of all Faiths are invited to join in this celebration of the “gift of hope” provided through organ and tissue donation and transplantation. Most religions in the United States either officially support organ and tissue donation or support the individual choices of their members. Temples, churches, mosques, and other places of worship that observe the National Donor Sabbath do so each in their own fashion.

Organ and tissue donation represents one of the highest forms of compassion and giving. Currently, there are over 97,000 men, women and children in the U.S. on the transplant registry and that number is growing. A new person is added to the list every 12 minutes, and sadly 17 people will pass away each day awaiting their gift of hope. Donor Sabbath provides an opportunity to educate people about organ donation and celebrate the life and hope it provides.

People often have misunderstandings about organ donation and are not aware of the new Illinois donor registry, which went into effect on 1/1/2006.

I’ve been fortunate to become friends with people whose lives were changed in an instant by organ donation. Some of them lost loved ones, but found comfort in knowing their loss saved the lives of others. I’ve talked to transplant recipients, who have such joy and appreciation for each day of life. I was blessed with the “gift of life” in 2006.  The experience changed my life for the better and strengthened my Faith in God. To me it’s a reminder that in all things, even earthly tragedies like illness and death, God truly does bring about good.

To learn more about Donor Sabbath, please visit the Gift of Hope website: http://giftofhope.org/NDS/index.htm

 

To learn more about organ donation or register in your state, visit the Donate Life site at: http://donatelife.net/

 

What is your religion's official viewpoint on organ donation? To find out, talk to your clergy or click here: Religious Viewpoints

 

Hello folks! I’m back. I’ve written dozens of blog entries in my head, but haven’t managed to put any of them on paper (or computer screens).

Well, the summer was busy. I traded in my 100 mile daily commute for a monthly train pass, left my job of 13 years in the suburban, natural surroundings for a high rise building on the busy streets of Chicago. I met new coworkers and completed major projects at my new job. I survived my final week of school and managed to complete my research paper, presentation and final exam – albeit by foregoing sleep. I began volunteering at Children’s Memorial Hospital, took on the job of editor for the Organ Transplant Support group’s monthly newsletter and then… I stopped and caught my breath.

Being healthy and getting your life back after a transplant sort of motivates you to get out there and live life to the fullest. Sometimes it catches up with you though. So, once things calmed down I threw myself into a few weeks of intense relaxing! The thing is… I wasn’t happy then. Instead of unwinding, I felt lazy and guilty. I’d get home from work at 6:30pm, grab dinner (usually a bowl of cereal), go crawl into bed, watch TV, and go to sleep early. I did catch up on rest, but I didn’t really like myself.  I was wasting valuable time. I wasn’t working out. I didn’t keep in touch with friends or family. I wasn’t cooking. I didn’t clean the house. I was self-indulgent and I was miserable.

School starts next week. I’ve started making dinners again. I dug my gym shoes out of the closet. Bible study has started. I scheduled my Dr appointments. The Liver Wellness Walk is just a month away. I’m updating my blog. I’m happier again.  It’s amazing how much more content you are when you spend your time focused on other people and activities.

Autumn has always been my favorite time of year and I’m looking forward to the change in season and getting back to my normal busy schedule. I have so many other things I want to “talk” to you about. I promise, I won’t be gone so long this time. I hope you’re all doing well!